Devotion (10 page)

I didn’t write during the year that Jacob was sick. Writing was my job, but I had no office, no time clock, no schedule, no boss breathing down my neck. Writing was how Michael and I both made a living—but now, neither of us could concentrate on anything other than making our baby well again. As if it was up to us. As if we might, if only we were smart enough, resourceful enough, brave enough, good enough, be able to reach into the future and fix things with our own bare hands.

Our days were defined by the five doses of powdery, white experimental medication. We tore open packets of the stuff, cut it into even lines, then sprinkled it onto baby food, or mixed it into formula. If Jacob spit up even a little bit, it was potentially catastrophic. Had the medicine been digested? Should we re-dose him? With the help of the pediatric neurologist, we were making it up as we went along. This wasn’t an exact science—but there was also no room for error.

The rest of the time, I sat in front of my computer, not writing. Instead, I spent hours on the Internet looking for references to infantile spasms. There were Web rings, parental support
groups, photographs of blind, deaf, physically and mentally impaired children. Parents told their stories: a three-year-old who had finally taken a single step; a five-year-old who had managed to wave. With each click of my mouse, I entered into a whole new world of pain.

I could tell, during that time, who among our friends and family had done the same research. I could tell by the looks on their faces when they saw us. It was something beyond concern. It was pity. They had seen those same photographs. They had called doctor friends. They had heard the unrelentingly bad news, the cold, hard statistics. And they believed that Jacob was lost to us. I couldn’t even look these well-meaning friends in the eye.

Not us, not us, not us
. It was the drumbeat by which I lived my life. I couldn’t stop reading, even though it made me feel worse. I needed to know everything, to stare directly into the monstrous face of this disease that was threatening to steal our son away from us. We were going to lick this thing—we had to. I had never been much of a fighter; it simply wasn’t my temperament. But now, my vision narrowed. My claws sharpened. I was a warrior, fighting for every bit of knowledge that could possibly help.

Fifteen percent of babies diagnosed with infantile spasms had positive outcomes. We were looking to be part of that tiny minority within the even tinier minority of babies stricken.
Fifteen percent of seven out of a million.
Statistically speaking, it was a bit like buying a lottery ticket expecting to win.

Every day, I took Jacob to a play group, or the park, or a Mommy & Me class. I figured if I kept things seeming normal, maybe they would eventually become normal. I sat in circles with other mothers, bouncing him on my lap while singing, “If you’re
happy and you know it clap your hands.” I put him on wooden play sets and in sandboxes with other babies, and hovered in a maternal cluster nearby. Most of us carried state-of-the-art diaper bags outfitted with compartments for bottles and blankets and changing pads. The conversation was a hallucinatory swirl of preschool waiting lists, the benefits of breast-feeding, the medicalization of childbirth, family bed versus Ferberizing. I dug my hand into my jeans pocket to be sure that I had a packet of medication with me in case we got stuck somewhere. I lived in fear of missing a dose by even fifteen minutes.

I couldn’t stop comparing. As the months went by, one by one, like birds flying out of a nest, the babies in his play group began to pull themselves up, to toddle a few steps—everything the authors of
What to Expect
said they were supposed to be able to do. They pointed, clapped, strung together words.
Should be able to, may be able to, might even be able to
—the owner’s manual to my child continually scrolled like a newsfeed through my head. One day, a perky Mommy & Me instructor told me that Jacob lacked upper body strength, and I should try to get him to do push-ups. I wept as I pushed his stroller home.

For the first time, I understood why the Adlers had closed their doors to me, all those years before. They couldn’t stand seeing me before them, healthy and fully alive—the very embodiment of everything their daughter would never be again. It wasn’t a failure of character. It was a complete and utter defeat of hope.

But I refused to lose hope. Every day, when not entertaining fantasies about applying to medical school (if there was a more useless occupation than novelist, I was hard-pressed to come up with it), I searched for stories with happy endings. On the In
ternet, there were none. I had heard one story, though: a friend offered to put me in touch with a woman he knew whose son had been diagnosed with infantile spasms many years before. That son had recently graduated from Dartmouth. Dartmouth! I couldn’t wait to talk to this woman. I longed for a story about a boy with infantile spasms who ended up at a great school. A few days later, my friend called me back. His voice was grim.

“I’m sorry. I don’t understand it, but she doesn’t want to talk to you. That time in her life was too painful. She can’t bear reliving it.”

“Not even to—”

“I’m sorry. No.”

I will never be her
, I silently vowed. One more item on the list.
If Jacob is part of that fifteen percent, I will never, ever be her.

These days, my conversations with people invariably turn to God. I have friends who call themselves atheists or agnostics. Friends who are believers. But the majority of people I know fall into a gray area, a category I would call the disenchanted.
I can’t believe in a God who would
—fill in the blank. Allow the genocides in Rwanda, Srebrenica, Darfur, to happen. Allow the Asian tsunami. Allow loved ones to die suddenly, tragically. The bottom line: How could God condone—or possibly create—so much suffering in the world? If God exists, he’s either indifferent to our pain, or sadistically inflicting it.
I refuse to believe in a God like that
, they say.

Did God save Jacob’s life? If God saved Jacob’s life, then it stands to reason that it was God who gave Jacob the seizure disorder to begin with. After all, we can’t pick and choose, can we? Something bad happens, there is no God. Something good happens, we thank him. If I were to believe that God was personally responsible for Jacob’s recovery, I’d also have to believe that he caused it.
Seven out of a million
. Why would he do that—to us, to anybody? When Jacob was sick, a well-meaning but dim-witted stranger offered my least favorite platitude:
God doesn’t give us more than we can handle.
Our child recovered. So did that mean that God didn’t think we could handle the dire consequences of Jacob’s illness? Thank you, God. But wait. Wait a minute. What about all those other babies? Had God felt that their parents were more equipped to deal with a lifetime of unending grief?

As I was sitting at my kitchen table trying to untangle the Gordian knot of all this, a friend called to tell me a story. Earlier that day, she had trailered her horse up to a nature preserve along with her teenage daughter and the daughter’s friend. They drove her huge rig along the steep, narrow roads of our town, around winding curves, straining up inclines until they arrived at the flat field where the horse trailers park. At that moment, when she tried to stop, the rig’s brakes failed. If it had happened on the way to their destination, surely they all—my friend, her daughter, her daughter’s friend, the horse—would have been killed. My friend went on to tell me that she had spent the rest of the day feeling very grateful to God. She felt that he had offered her protection. She gave other examples of times in her life during which God had supplied similar protection. Clearly, she felt that God was watching out specifically for her.

I was relieved that my friend was home safe—but something about her story was rubbing me the wrong way.
Oh, so God singled you out for good fortune? For being on the right side of near misses? For specialness?
To distract myself, I clicked on the
New York Times
Web site. Six Iraqis were killed by a roadside bomb hours earlier. A fire had blazed through a Brooklyn building, killing an entire family. A child had been abducted in the Midwest. I didn’t believe that God had a hand in that day’s tragic events—any more than I believed that he had steered my friend’s rig to safety. I didn’t believe that God had stopped Jacob’s seizures, or that God had caused my father to pass out behind the wheel of his car. I didn’t believe that God considered what people could or could not handle. Still, I said
thank you
and
please
into the thin air. I prayed for the willingness to pray—not to an indifferent God, certainly not to a punishing and vengeful God, not to a God who was watching out for me—but to the God I felt all around me, the more I looked.

Sometimes it feels as if I’m building a bridge. This act of bridge-building requires stamina, balance, and more strength than I think I possess. What’s more, I have to walk fairly far out onto the bridge as I’m building it. At this point, I’m way out there—too far to make it back to land if the bridge starts to splinter. Sometimes it sways. Once in a while, I hear it creaking. Below me, a precipitous drop: a rock-filled ravine. Best not to look down. Best to put one foot in front of the other.
Krama akrama
, the Sanskrit teaching
goes:
Step by step and all at once.
I guess there’s only one way to get to the other side: best to have faith.

My cousin Mordechai—Shirley’s oldest son—has seven children. One or another of them always seems to getting married. Large cream-colored envelopes arrive with some regularity in the morning mail, addressed in ornate, swirling calligraphy:
Mr. & Mrs. Michael Marrens
.
Mr. & Mrs. Michael Marin. Mr. & Mrs. Michael Marron.
It’s become a joke between Michael and me. Even though my family has no trouble with names like Avshalom or Nechemya, they still can’t get my husband’s surname, which is Maren, right. Inside, the invitations are engraved in both English and Hebrew. The ceremonies are held at facilities in Orthodox enclaves like Monsey, New York, or sometimes Jerusalem. The wedding date is generally only a couple of weeks away; no long engagements for young couples who have never once been alone together, never so much as touched hands.

A recent invitation threw me into a mini-crisis. Mordechai’s third daughter was getting married. This wedding was being held only a couple of hours’ drive from us, on a night we happened to be free. We had no legitimate excuse not to go, really. But still, when it came to sending in the reply card, I was paralyzed. Declining made me feel sad and alone. Accepting meant entering the universe of my family and their customs, which sometimes had the power to make me feel even more deeply sad and alone. How
could I be related to this group of people, when our lives were so radically different?

But I was trying to understand where—if anywhere—all this fit into my own Jewishness, wasn’t I? How could I even pretend to be exploring these matters if I wasn’t willing to be made a little uncomfortable? Sylvia Boorstein’s words echoed through my mind, where she seemed to have taken up permanent residence:
It’s not a question, for me, of deciding to complicate myself with Judaism. I am complicated with Judaism. I have too much background in it not to be.

Complicated with it, indeed. A few weeks later, Michael and I made the trip to Monsey, and parked outside a shiny pink building. We sat in the car for a few minutes, watching bearded men in black coats pass by. The bride was having her photograph taken. She looked beautiful, impossibly young. Was she eighteen? Nineteen? She was surrounded by girls wearing modest dresses, women in perfect wigs. They looked so familiar to me. Some of them were probably relatives. The family had expanded so rapidly I could no longer keep track. Babies were born and had grown up while I was busy doing other things. The couple who had gotten married at the last family wedding we’d attended now had five kids of their own.

“I’m not going to dance.” Michael stared straight ahead as we continued to sit in the car. Neither of us were ready to make a move.

“Don’t worry, honey. You won’t have to dance.”

“You said that last time.”

“Last time was twelve years ago!”

“Yeah, but still. It was traumatic.”

It was true. Michael—at the time he was my boyfriend—had
made me promise that he wouldn’t have to dance. Under
normal
circumstances, dancing wasn’t his favorite activity; even dancing with me usually involved a couple of whiskeys. But what was I supposed to do when my cousins Henry, Mordechai, and Jonathan had converged on Michael and picked him up out of his seat by the back of his jacket? The next thing I knew, he was surrounded by a vortex of sweaty men lifting each other up on chairs high above their heads.

The parking lot was filling up. We left the cocoon of our car and slowly walked toward the shiny, pink marble building. The black-hat crowd milled outside the two arched entrances framed by gold Hebrew lettering: apparently men and women weren’t even allowed to walk inside together. But then I saw, beyond the doors, that there was pre-ceremony mingling going on in the lobby.

“I don’t have a yarmulke,” Michael whispered, once we were both inside. I looked around for a basket. Usually there was a basket of yarmulkes. But then I realized that none of these men would ever find themselves without one.

With Michael’s bare head, my obvious lack of wig, and perhaps most of all my bare legs beneath my knee-length dress, I knew we looked as if we had made a wrong turn somewhere around the George Washington Bridge. We had stumbled into the wrong party. Where were we going to find him a yarmulke?

“Excuse me.” A couple walked up to us. I had noticed them in the parking lot. They had driven a Volvo with Vermont license plates and looked like New England academics, as out of place in this crowd as we were.

“Do you know if men and women are seated separately?” the woman asked.

I told her I was quite sure we would be seated separately. After all, we hadn’t even entered the building through the same door.

“What about for the ceremony?” she went on.

Same deal. Men on one side, women on the other. I felt good about myself, filling this poor woman in on the rites and rituals with which I was familiar. See? I did belong here. I could be part of it—I could claim it as a piece of myself, no matter how small.

“You know”—she inclined her head toward me conspiratorially—“we’re so relieved that there are other non-Jewish people at this wedding.”